“When people say their lives have been cut in half – that is how I feel.”
These are the words of mum-of-three Georgia Bedding, who has described the moment she found out her father, David Bedding, 68, a previous Haywards Heath deputy mayor and councillor had an aggressive brain tumour and harrowing prognosis.
Georgia, 40, from Lindfield, lives with her partner, Neil, 41, and their three daughters, Mollie, seven, Matilda, four and Scarlett, 18 months.
Since finding out about her father’s illness she has dedicated nearly all of her time to raise awareness of the ‘horrible disease’ and to raise as much money as possible to pay for her father’s treatments.
She said: “We had no idea anything was wrong. He had no symptoms apart from a slight numbness in his fingers and occasional speech loss, which we realise in hindsight were minor seizures.
“No one noticed any of these at all though – it was just something that he noticed and vaguely wondered about.
“He became ill in Latvia when he was on my brother Simon’s stag do and had was was thought to be a stroke.
“He came home and had an MRI and was told he has glioblastoma multiforme (GBM) – which is rare and the most aggressive cancer that begins within the brain.
“We were just in shock. Dad was a very young minded man, busy with work and active – we all had skiing planned and have had to cancel it.
“It has been an utter rollercoaster of emotions – sheer devastation, disbelief, frustration, elation, dispondency.
“You have no idea what is round the corner – when people say live each day – you don’t realise how true that is, but it was not something that I could just accept.”
Georgia, who owns a property business in Dundee and now lives in Steyning, decided to research available treatments for her dad.
She said: “We decided to go to London for treatment – we just thought it was the best option. He had an emergency operation to take out the tumour. It was really successful as it was caught early. He was back to work within a week.
“He has started radiotherapy and will then have nine months of chemo.
“He suffers from vertigo and having to lay down for radiotherapy has been horrific for him.
“Mum has been amazing, dad’s biggest support system – they have been married for over 40 years.
“Dad has a huge support system which really does help, we have all naturally taken roles and we are an incredibly close family.
“He has a great will to live and a great outlook on life and we have been told that this is half the battle won. He is up for any sort of treatment.”
Through research Georgia found that one per cent of money raised for cancer goes to brain tumour research, which she says is called the ‘Cinderella of cancer’.
She said: “The lack of varying treatments is scary and the fact that those which are available aren’t discussed, is terrible.
“I have come across different treatments which are the future of cancer, such as immunotherapy and gene therapy.
“I feel the standard of care with the NHS today is not enough to beat it – chemo and radiotherapy is not enough – the prognosis speaks for itself.
“I have come across long-term survivors of GBM and none of them accepted the standard treatment and all underwent a ‘cocktail approach’ – which is lots of different treatments.
“However I cannot fault the care of the sheer mechanics of the NHS – it is truly outstanding and it it not their fault they can’t offer these type of treatments.”
To pay for these private treatments will cost £100,000, which Georgia said is ‘beyond them’.
She said: “We have raided our piggy banks and bank accounts but we need help in raising a lot more.
“It is imperative that we raise the money needed for the immunotherapy as quickly as we can, so that as soon as his radiotherapy finishes he can go straight on to this.
“I am utterly frustrated and sad that my dad’s chance to live could be taken away from him and for other people too.”
The family are putting on a number of fundraising events to help pay for the treatments.
Georgia said: “I am putting on a Wimbledon final in my back garden and we are doing a quiz night and cocktail party.
“My brother is also doing the London to Brighton bike ride and my niece in the Isle of Wight is doing a cake sale.
“Our family and friends have rallied to help us and have been amazing.
“Mum and dad have always supported me and now I feel like it is now their turn.
“It is also Brain Tumour Awareness Month, which people know as ‘Wear grey for May’, so we are determined to raise awareness for this horrible disease that affects more people than you think.”
David, who has lived in Lindfield for the past 32 years with his wife, June, was deputy mayor of Haywards Heath between 2010 and 2011 and a councillor at Haywards Heath Town Council between 2007 and 2011.
Georgia said he was heavily involved in the planning decisions which led to the station development and new Waitrose and took a principled stance against the proposed demolition of Clair Hall as part of the station redevelopment.
Steven Trice, town clerk at Haywards Heath Town Council, said: “Haywards Heath Town Council is saddened to hear the news of David Bedding’s illness.
“David served the town, along with his son, as a councillor with the remit of chairing the council’s busy planning committee during the period of 2007 to 2011.
“The council’s thought are with David and his family.”
To donate to the Bedding family visit www.justgiving.com/crowdfunding/davidbedding2017.
Don’t miss out on all the latest breaking news where you live.
Here are four ways you can be sure you’ll be amongst the first to know what’s going on.
1) Make our website your homepage
2) Like our Facebook page
3) Follow us on Twitter
4) Register with us by clicking on ‘sign in’ (top right corner). You can then receive our daily newsletter AND add your point of view to stories that you read here.
And do share with your family and friends - so they don’t miss out!
Always the first with your local news.
Be part of it.